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mental illness

This is a very sweet story about Anthony Bourdain that I ran across this morning. It’s about his championing for, not just people in parts unknown, but in our very heart of America.

I know I’m not the only one out there who is still very rattled by his suicide and this former Psychiatric RN, sister of a schizophrenic brother, and daughter of an often depressed father, has some things to say.

The continued posting of these “reaching out” memes and comments, although may be helpful to some, is a superficial response to this complicated issue of suicide. And, in some cases, it can make things worse for some people.

Depression with suicidal ideation has its own set of complex symptoms. Like a heart attack does–and, similarly, many of them are universal and identifiable. As heart attacks have warning signs like chest pain and pain down the left arm, so does suicidal depression.

One symptom of that kind of deep despair is that people have a clouded set of thoughts–that they truly start to believe that the world is conspiring against them and that their presence is detrimental, not only to themselves, but the world at large including their own loved ones. These symptoms become very real in their minds. They are not excuses or weaknesses or made up stories. THEY ARE SYMPTOMS OF THIS DISEASE.

One thing that can help ground a suicidal person is reminding them of this. That these thoughts are not who they are, but symptoms, just like chest pain is a symptom of a heart attack. SYMPTOMS THAT CAN PASS. Another symptom also being, that these symptoms will never pass. Do you see the drain they circle in?

One reality check I have given, even to myself, is “you are likely feeling that this is never going to end, and that is a symptom of the disease process you are immersed in right now, and even that set of thoughts is going to pass.” This helps to distance somewhat from the pervasiveness of it. Even for a second, a shift can begin, a life raft can be seen in the distance.

Encourage them to look for change, even a change in a momentary thought or feeling–even if the change is a different kind of pain, but still pain. Change can equal movement out of what feels like a devastating stuck pit that will remain forever. The slightest change, can signal to the deep psyche that evolution is possible even when it has not registered yet to the conscious mind.

Expecting someone experiencing the throes of that kind of immobilized, pervasive symptomology–to rail against it completely and be able to reach out– is akin to asking someone in the throes of a full blown myocardial infarction to begin CPR on themself.

There is so much more than these trite “reminders” or “admonitions” to suicidal people to “reach out”. I think more has to be educated to THE REST OF US, to reach in. How to do it, what to say, when to intervene, how to intervene.

I’ve had to do it with my own family acutely for the last several years. Identify those moments when it is time to take over for them–get them in the hospital or to a doctor for medication. Not to “encourage them” but to simply sweep them up and say “we are going, now”. For both my brother and my father. Psychosis and depression have plagued my family my entire adult life. I know this world intimately. I have had to find and realize the strength to sit right there in a hospital or doctor’s office and say the words for them that they cannot say. Words like “he is hearing lots of voices telling him to harm himself” or “he is experiencing significant depression right now”. Words they were unable to utter, again, because they were consumed with the actual disease (or embarrassed, or in denial, or…).

So what if you get someone to be evaluated who ends up not hospitalized or deemed in need of that? It’s the same as if you take someone to the hospital who, may be having a heart attack, but in reality is experiencing indigestion. Ok, now you know. Now you’ve done something. Now you’ve communicated to them that they are not going to have to manage this distress alone.

And, yes, there are the Histrionics who cry wolf and have a whole different kind of mental illness issue going on, but don’t let them inhibit us and let the rest slip through the cracks. It’s pretty easy to discern these things when we are honest with ourselves.

People are often afraid to take action when mental illness is involved. I moved my brother to Arizona for that very reason–people where he was living were not taking action and he was drowning. He would not have survived it, and I could see that clearly. I could see it because I was not suffering in the ways he was. He is thriving so well right now, because he has a coalition of caring people watching him, every day. But that took years to craft and is still always being crafted.

None of us are afraid to step in and call 911 or start CPR with a person who is choking or having an obvious medical emergency. We need to get better with this when it comes to mental health. This responsibility should not solely rest on the acutely ill patient–I believe it rests more on the rest of us. We need to know more and have more encouragement to act. I’ve yet to see the memes instructing loved ones to call a suicide help line for someone they may be worried about.

Don’t get me wrong–no one is responsible for the devastating choice of suicide of another, just like no one is responsible for another person’s heart attack.. YET we need to understand it better and have deeper and more global interventions and take more steps to unburden our loved ones who are suffering before this becomes their only option. We need to find more oxygen masks, and use them. To unabashedly be unafraid to slap that right on their face and tell them to inhale. Then find people to take care of them, until they can breathe on their own again.

I had a beautiful drive up this afternoon. I mean every drive up is beautiful but today’s was particularly spectacular. I can tell when I need to get out of the city when I start having road rage just pulling out of my carport. As an introvert, the wide space of the open road is like visual Prozac for me.

I hauled up a few gifts for the house including our new security system. I call him ADT which stands for A Dangerous Thing.

I bought this wild fella a few years ago with my friend Rob (who also got one) at an art fair and he’s been all over the place. I had a last minute brainwave this morning, grabbed him out of my garden and threw him in the car. He looks right at home there doesn’t he?

Funny thing is some people on Facebook thought it was real. Um, what did they think it was? An alligator? 😉

I think he’ll do the trick though because people were pretty terrified just from the photos. HA!

I had one of those OMG moments this week about John getting in the chorus. First of all, he’s doing really well right now. We spent much of the day together yesterday–lunch, Dead Poet’s Society, dinner, TV viewing (two episodes of Chopped). He was engaged, present, conversational and an all around darling to be with. I cherish those kinda days with him.

I got to thinking about his preparation for the audition. About how every time I asked him to sing a song for me, I mean every. single. time. he came up with the song “Jingle Bells”. You can here me saying just that in the video here.

(not this video, the one in the link above)

I kept saying “what is it with you and the Christmas songs?”. He would reply “it’s my favorite song”.

Well well well, how interesting that the concert he will be rehearsing for starting Sept 24 is their Christmas concert.

It sure makes ya wonder doesn’t it? Just how much of this is illness and how much insight or premonition or foresight or some kind of communication going on that the rest of us don’t hear.

I find that absolutely fascinating and have decided I’m going to pause and pay better attention to the things that he’s so devoted to.

Katie, such a lovely poem. You’ve given John a great gift. That of Hope.. His is a new beginning, learning to walk again with confidence. You, as his guide, lighting the way. Give yourself permission to rest along his journey, There are days when he will carry you. You will find what you seek, Cradled tightly as you listen to the heartbeat of your love. That will be your Destiny.

She left that yesterday responding to my post about Faith.

I can’t tell you how close John was to being hospitalized again over the last 24 hours. It was as bad as it gets. Both of the programs he participates in were responding in crisis mode. I moved him here indefinitely. His case manager met with me twice today very concerned about Alfonse and problem solving how to keep him out of the hospital. He said to me “you know you are the reason John is alive”.

I thought about that comment later and thought, no, I am a big part of the reason he’s done as well as he has over the last year, truly a miracle in comparison to the last 20 years. But what’s kept him alive is far and above me. He’s been in so many dangerous situations, taking his hands off the wheel of his car when voices told him “it’s time to go to heaven” on a major highway, etc. I don’t want to revisit these. But something, someone far beyond me has kept John alive all these years, that’s for sure.

As I left John at the program, I gave him a big hug and told him I loved him and the nurse he was visiting with said “You have a good sister” as I walked out and he said “yes I do” in that flat distracted way he gets when he’s bombarded by voices and paranoia. I am so aware when I go there just how rare it is that mentally ill patients have support. I often feel like a unicorn when I’m in there as so often patients are sitting there alone. Just like John was for so many years before he moved out to Arizona. It just breaks my heart thinking of it then, seeing it now.

I came home, with thankfully almost a full day off, and crashed hard. I barely got off the couch all day, laying there dozing on a heating pad. I have to say I was in some pretty extreme pain all day so I just rested and did my best to rest and breathe and wait it out. Gallstones make their presence known on their way out, I’ll just say that. They don’t let go that easily. They like to make a grand exit.

I had no idea what I’d get around 2:30 when the shuttle dropped John off. He was really pretty bad when I left him at the program this morning. I didn’t know if I’d have another night of acute psychosis and how I’d deal with that not feeling great myself.

On first look, he was already more connected when he walked in the door. I think the hardest thing about mental illness is the way it hijacks someone’s personality. It’s like John disappears behind a wall of that. And that is so far from his sweet charming little personality, it’s just depressing. It’s almost like a death in itself.

So he came in and went straight out to smoke. I asked him to do some sweeping for me so he didn’t track in the palm debris when he came in and out smoking and he did so readily. He’s usually very cooperative and doesn’t complain when I ask him to do things. He doesn’t often initiate but that’s ok. He cooperates.

He saw the heating pad by the couch and asked if I was in pain. I told him that my back and stomach were killing me all day and I’d been working on it. He said “Oh I’m sorry you’re not feeling well” then stood up from the couch.

He walked over to his suitcase , opened it, pulled out a bag and in it was a medication vial. He handed it to me and said “I have these ibuprofen tablets from the hospital and I think it will help you. Why don’t you take one?”. I sat there, stunned that he was initiating this help to me. I just said “ok that’s a great idea, I hadn’t even thought of that”. He instructed me not to take another one for 8 hours and no more than 3 over a 24 hour period. Like a good little nurse.

How sweet was that? And you know what? It worked!

I leaned down to hug him as I left to work for a bit and he hugged me back so tight saying “I love you my dear Sister”. I thanked him for helping me with his ibuprofen and told him it was really helping, because it was.

I made it in to treat my client and back home again pain free after a day of misery.

As I walked in the door, I saw John on the phone and stepped right in to these words “Why don’t you call me next week? I’m staying at my sister’s for awhile. She’s not feeling well so I’m staying here to take care of her”.

Ok, if that just didn’t bust up my paradigm right there. I love being proven wrong in cases like this. He thinks he’s staying here to take care of me.

And so I’m going to let him.

We had a lovely dinner together undistracted by the voices that consumed him just this morning. And now he’s resting quietly over on the couch stretched out watching The Next Food Network Star. The key word of that sentence is quietly.

Alfonse and I will get through this life together, extending a hand, hopscotching ourselves over each threshold we encounter. Together. Hand in hand.

Protected.

(took this photo the first step we took in to our Sedona home last February)

When John came out to Arizona for a mental health program in the summer of 2012, he told me he would only move to Arizona permanently if he didn’t have to live in Phoenix during the summer. I can’t blame him, the summers here are brutal. I didn’t know how I would make good of that promise as there was no way I wanted him to return to the life he’d had in Illinois where he’d become so unstable. Even for a day much less a summer.

One month after he’d arrived, I took him to Sedona for the 4th of July. I’ll never forget the look on his face as we turned that corner and he saw the red rock view and he kept exclaiming “Kathy, I love Sedona…I love the red rocks…I love Sedona” over and over. It was like a magic spell was washing over him. We stopped for lunch at the swankiest resort in town–Enchantment. We had a drink and a snack and on the inside I was marveling not just at the view but the fact that I was sitting here in this environment, with my brother, simply dining, chatting and taking in the view. Without his being consumed with symptoms. It was at this place that I realized we were really out of the weeds with his illness.

Fast forward a few months to January 2013. We find ourselves back in the same restaurant eating lunch. I took this photo of him that day. Our Dad had told us some months before that he wanted to purchase another vacation type property for our family. After much thought, we landed on Sedona for many reasons but the look on John’s face that July day was certainly in my mind. Sedona would be a perfect location. He could get away for the summer but not be too far. I have spent years working and training in Sedona so it was just perfect.

By this day in January, I’d been looking online for properties for a couple of months. We went up there for other reasons but John and I decided to have lunch, then go roaming neighborhoods to see what we could see. Just a little recon expedition.

We drove in to a condo neighborhood that I’d seen online with just one property up for sale. We stopped by that location, John got out and grabbed the flyer in the For Sale sign then looked ahead and said “hey there’s another For Sale sign up there”.

We drove up to that property, he got out and grabbed the flyer again and to our surprise it was a brand new property, never lived in! So we got out and peeked in all the windows and liked what we saw. On a whim I just called the number of the realtor on the paper and she picked right up. She asked me where we were, I answered “right in the driveway” and she said “give me five minutes, I’ll come right over”.

She showed John and I that home that day and by the end of our tour, my brother was showing me where we could put the Christmas tree. Every window had an amazing view, upstairs and downstairs. Three bedrooms, three bathroom, perfect for us.

We convinced our Dad to take a look the next day and let’s just go ahead and say, my father bought that house two days after the day John saw that sign. It’s our new house!

John has not seen it since the day we toured it. He spent a month in the hospital with a drug reaction this winter so missed the trip I took up there to accept a furniture delivery. When I was up there by myself, I realized the builder had left one item behind that they had “staged” the property with. It was left in Alfonse’s bedroom.

Life isn’t about waiting

for the storm to pass…

It’s about learning to

Dance in the Rain

When I saw this proudly hanging on the wall facing his new bed, I felt like I was seeing that cane by the fireplace in the movie “Miracle on 34th Street”.

Tomorrow we head up together to accept a delivery of all of his furniture/furnishings from his apartment that’s been closed up in Illinois, finally.

For some reason, Alfonse had been accumulating new furniture, new dishes, new flatware, glassware, linens, etc over the last year. Funny how everything has a “Sedona” vibe in earth tones and “Santa Fe” style. It’s almost as if he predicted this home purchase.

And finally he will be reunited with all his personal belongings he’s been without for a year now.

And I’m sure I’ll take him back to the Enchantment Resort for a little celebration while we’re up there.

I look at this photo of Cindy, Buddha and I on the porch steps of our family’s Maine summer cottage, just moments before we were taking off to head back home in the summer of 1988 and remember how carefree we all were then. I remember how Cindy and I went out one day shopping and bought those hats together. I remember showing them off to my Dad who said “Kathy, that hat is you” and how Cindy kind of wistfully replied “I want a ‘you hat too’ “.

I remember that year she just wasn’t usual confident chipper self. She was just weeks shy of turning 30. She decided when we got home that she needed to work on some things so she joined a self esteem group. She had been enrolled in that group just a week or two when she met Michael Apelt and everything started spiraling downward, unbeknownst to any of us. None of us navigated our childhood unscathed. I’d been in counseling for a few years at that point having suffered a severe anxiety disorder in my twenties so I whole heartedly supported her reaching out for help.

One of the assignments given in that group was they were to ask someone, a loved one, to write a list for them of all the things they loved about them. Cindy asked me of course. I wrote this crazy list of deep and superficial things extending in to all the margins in a green marker type pen. Her therapist, who had to testify at the trial of Cindy’s killers, told me that she’d had them all read their lists out loud in the group. That Cindy was crying so hard she could barely get through it but the therapist kept encouraging her to read it and she did.

Can you possibly know how precious her sharing that with me was? And is now? That she was given that assignment and chose me to participate leaving me behind knowing she knew all of the ways I loved her before she died? In writing no less.

I look at that picture of those steps and it also conjures up a more recent memory having to do with John. In the Fall of 2011 I made my annual trek to Maine to the family cottage. My Dad had of course flown John in from Illinois where he was still living to join us. Having John on vacations, until recently, was a mixed bag for all of us. Sometimes he would function, much of the time he was completely consumed with symptoms and disruptive. I remember saying to my father before coming that year that I’d like for John to only be there for half of my trip that “I’d like a vacation not consumed with mental illness” for my own sanity. Now, with all that’s happened, I can’t imagine feeling that way as so much has changed in a short time, but it was the truth in 2011.

That year John was particularly symptomatic. That means he heard voices constantly, was totally paranoid, couldn’t engage in converation much and mostly sat and talked to his voices and chain smoked. Where his “smoking section” is is at the base of the steps in that photo. That vacation he had escalated so dramatically, yelling at us and filled with what’s called “religiosity” talking the Devil, Hell, etc., that my father and I took him to the Psychiatric Emergency room for a shot of Haldol. We talked about hospitalizing him. On our vacation. This is the reality of what we lived with for many years with John. What he lived with with himself.

I hit some kind of wall that year. I borrowed one of John’s cigarettes (well, I wasn’t intending to give it back) and went and sat on the front steps facing the ocean and decided to have a cigarette with Cindy. I sat there, by myself, smoking that cigarette and literally talked to her out loud. This was a huge breakthrough for me because even thinking of her at the cottage was excruciating even all those years later. The last place we were all together. It’s somehow easier to think of making new memories instead of resurrecting the old ones. At least it was then.

We smoked and we talked and I simply asked for her help dealing with John. That I was lost and I needed her to help me. I couldn’t do it alone and I saw no light at the end of the tunnel. I saw a future of care taking both him and our Dad as they both aged and had more needs. And I just never had anyone at my back. At least that’s how I felt being single and managing my own life alone for so long. I was born a middle child. I wasn’t supposed to be on the front lines.

I have to say I felt somewhat better after that smoke break.

Shortly thereafter I went looking for my Dad and walked out the back steps of the cottage, those steps we are sitting on in the photo, past John who was sitting on the landing smoking, talking to himself as usual. What happened when I walked past him again is where the stars started to align and where I got my first sign.

I noticed John sitting there turning something over and over in his hands. I sat down in the chair next to him and asked him “what’s that?”. What he was holding was a small decopauge plaque. One that Cindy had made in the 70’s, this being our “summer craft” that year. He showed it to me and what it said on the front that she had burned in to the wood with my Dad’s wood burning tool. Emblazoned in this plaque were the words “Take the Valid Choice” with a tiny flower burned next to the words. It had a sand dollar and shells glued to the front. Her initials and date was burned on the back. John kept repeating that phrase over and over “‘take the valid choice’, Kathy, isn’t that funny? Remember how she always used to say that?”.

Now this phrase had become a bit of a joke in our family. Our Dad, a Psychologist, would always turn decisions back on you when you asked for advice and ask questions back like “which do you think is the valid choice?”. It drove us nuts as we wanted him to just make a decision and tell us which way to go and he just never did that. So, probably Cindy, at one point blew out with exasperation something like “can you please just make the valid choice for me?”. It was hilarious so turned in to a family joke.

I asked John where he got that plaque and he replied “from that shelf above the kitchen door”. Now that shelf is high. It’s not something that would normally catch your eye. It’s something you’d have to be looking up to see. Moments after my smoke break with Cindy, John was drawn to look up to that shelf, reach up and take that plaque off and go outside with it and show it to me as I passed by.

I knew then and there that Cindy was in the equation. That she was with us. That she was going to help me. Help us.

Less than a year from that moment by John’s 50th birthday, he had disappeared, literally disappeared for weeks on end, not once but twice. Missing Person reports, police tracking him down and the whole nine yards. This was new behavior. Things were just getting worse.

After the second time I broke down on the phone with my father, bawling, telling him I just couldn’t handle it. I didn’t know how to manage him, how to deal with this and have my own life at the same time.

And what my father replied truly shocked me. He told me I was entitled to my own life and that he thought I needed to let my brother go. That he could see the pain this was causing me and that John had to wind his way through this life and if this was the way it was happening for him, I had permission to detach. To let him go.

I just broke down that night. Tears in to my sleep.

And woke up the next morning and called my Dad and said “thank you for the permission Dad but it’s me we’re talking about here. I can’t do that”.

And then the world opened up for Alfonse. I got the instructions of what to do and followed them. He was escorted back in to life by a team of angels who guided me and my decisions/actions every step of the way, who gave him his life back. I listened. I took the “valid choice” which really was the only choice and have been guided by them, by Cindy, by our mother, ever since. More of that story to come later.

Just say that John is beating all the odds and is recovering from Schizophrenia in some kind of “waking up from a coma” sort of way.

And anyone witnessing it is fortunate to know that miracles truly are available on this planet. And when I say anyone, I mean, especially me.